key: cord-0072689-pb8zutcc authors: Kluesner, Nicholas H.; McGrath, Norine; Allen, Nathan G; Dilip, Monisha; Brenner, Jay title: Ethical issues and obligations with undocumented immigrants relying on emergency departments for dialysis date: 2021-12-29 journal: J Am Coll Emerg Physicians Open DOI: 10.1002/emp2.12590 sha: 5e621ea337a2fb1ebe6d3b9b77276d99cced5c5e doc_id: 72689 cord_uid: pb8zutcc Undocumented immigrants with end‐stage renal disease in the United States are uniquely disadvantaged in their ability to access dialysis. This article examines the unique circumstances of the medical condition and healthcare system, including the relevant legal and regulatory influences that largely relegate undocumented immigrants to relying on emergency‐only dialysis through a hospital's Emergency Medical Treatment and Labor Act obligations. We explore the ethical implications of this current state, emphasizing the adverse effects on patients and staff alike. We also review necessary actions that range from the actions an individual emergency physician to changes needed in federal policy. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. © 2021 The Authors. JACEP Open published by Wiley Periodicals LLC on behalf of American College of Emergency Physicians requirements exist at the federal level to facilitate or mandate the standard of care for these patients, who experience frequent and foreseeable critical decompensation without regularly scheduled dialysis. The narrow scope of EMTALA, coupled with unique aspects of ESRD, warrant an in-depth evaluation of the moral dilemma confronted by emergency physicians when UIs with ESRD present to the ED. This article provides a description of the problem at hand, explains how it is distinct from other issues of UI patients' medical care and EMTALA responsibilities, provides an ethical analysis of this dilemma, and finally proposes actions that individual practitioners, health systems, and public officials should take to address the issue. presenting within 250 yards of the hospital. Emergency-only hemodialysis (EOHD) is the practice of providing dialysis care to patients through the ED only when their illness severity rises to the level of an emergency medical condition as defined by EMTALA-usually dictated by hyperkalemia, uremia, or volume overload. This law is explicitly not intended to be a federal "malpractice statute," and hence it confers no obligation to provide the standard of care to ED patients, but only evaluation of the patient, stabilizing treatment of any emergent condition, and a transfer if further stabilization is needed at a higher level of care. As such, even though a patient with ESRD will predictably be in an emergent condition after 72 hours without dialysis, no EMTALA obligation exists if an emergent condition does not exist in that moment. Although the 250-yard rule extended the EMTALA obligation geographically beyond the front door of the ED, no such exten- Kennedy allowed for medical care to be given to people immigrating to the United States to provide labor. Ten years later, Public Law 92-603 extended health insurance coverage to ESRD patients who had worked long enough to receive social security benefits or had a spouse who had done so. 3 Neither of these federal statutes includes UIs, who remain only covered by EMTALA. The unfunded EMTALA treatment mandate does not apply to outpatient dialysis centers. Two major for-profit companies, Fresenius and DaVita, own dialysis centers that provide nearly 75% of all US dialysis treatments. 4 These companies coordinate some charity services, but there remains no systemic solution to UI patients needing regular dialysis. These charity-supported dialysis services are typically through a third-party non-profit organization, such as the American Kidney Fund, supporting nearly 15% of US dialysis patients. 5 However, concern has been raised about the forprofit motivations and kickback relationships between the nonprofit charities and for-profit corporate dialysis companies. 6 The cost of dialysis (typically up to $90,000 per year) poses a substantial obstacle for UI patients with ESRD. 7 9 Texas, in contrast, does not provide Medicaid coverage for routine dialysis of UIs with ESRD, putting a further burden on EDs, local hospitals, and public healthcare systems. 10 These are just a few examples of the vastly different standards of care and practice patterns for UI patients with ESRD. One in-depth analysis of the cost and impact of such a system identified nearly $21.8 million dollars of hospital care associated with this approach annually. 11 Although the Affordable Care Act, enacted in 2010, extended health insurance coverage to millions of Americans, it did not extend medical coverage to UIs with ESRD, further underscoring and perpetuating this problem. In contrast to most other medical conditions, ESRD-like type 1 diabetes mellitus-is a chronic medical condition only because a life-sustaining treatment is available. Without RRT or insulin, both are uniformly fatal. When these treatments are regularly provided, they transform rapidly fatal diseases into stable chronic conditions that can be managed for years. This paradoxically means that patients can be in a stable condition that will predictably and rapidly progress to an emergent condition if not treated. The expected and rapid (typically over the course of days) decline from a stable condition to an emergent condition that can be treated effectively through dialysis, but at substantial cost to patients of profound morbidity and risk of mortality. This situation raises significant questions about emergency physicians' ethical obligations to UI patients with ESRD. The following section examines those moral questions. Since the inception of intermittent maintenance hemodialysis as a treatment modality in the 1960s, access to this expensive and life-saving technology has posed ethical issues. 12 solely to a lack of legal residency. Individual physicians and health systems lack sufficient resources to address this problem, and thus its correction requires a change at the broader policy level. EOHD is often referred to as "compassionate dialysis," a doublespeak euphemism for cyclically providing treatment only when failing to do so would result in imminent death. 16 On its surface, it may seem like a beneficent effort within a broken system, but EOHD has been described as a "cruel carousel" that is far from compassionate. It is comparable to treating patients for diabetic ketoacidosis in the ED and then discharging them with no provision for, or anticipation of, access to insulin, and advising them that they should try to return to the hospital when they are once again near death, but not before. When transitioning from EOHD to scheduled hemodialysis, patients reported significant improvements in their chronic symptoms: 100% improvement in nausea, 57% for pain, 94% for appetite and shortness of breath, 87% for anxiety, 86% for depression, 65% for tiredness, and 60% for drowsiness. 17 Caregivers experienced higher levels of stress, greater caregiver burdens, more unpredictability, greater harmful effects on children, and more reliance on faith in God when their loved ones with ESRD were receiving emergency-only hemodialysis. 18 Although meeting immediate EMTALA obligations for care, EOHD fails to deliver care that is medically equivalent to regular outpatient dialysis. The probability of death for patients receiving EOHD begins diverging from patients receiving standard dialysis at 1 year and is 14-fold higher by 5 years from dialysis initiation. 19 In addition, EOHD results in patients experiencing persistent severe physical symptoms and psychosocial distress and is 3-5 times more expensive annually than standard dialysis treatment. 20 In addition to the above ethical arguments delineated, health care professionals may experience moral distress associated with poorly caring for patients. Moral distress occurs when one knows the ethically correct action to take, but feels powerless to take that action. 21 Participation in EOHD has been found to be a source of moral distress and professional burnout for involved clinicians 22 . Emergency physicians may be particularly vulnerable to this source of moral distress and its manifestation as burnout because of their role as gatekeepers to EMTALA services such as EOHD. For the individual emergency physician, repetitively stabilizing and discharging UIs through EOHD, without a greater plan or institutional support, may feel like participating in neglect or abandonment. Forty percent of emergency physicians demonstrate high levels of symptoms consistent with burnout, and burnout results in adverse effects on all types of patient care, healthcare costs, and physician health. 23 Although the obligation to address social determinants of health (eg, undocumented status) that affect the health of ED patients is typically construed as a patient-centered moral argument, 24 in this case it is also a workforce wellness, safety, and longevity concern. The ethical and moral problems created by EOHD cannot be solved at the individual patient level. The issues require system-level solutions and should involve burden sharing rather than burden shifting. Practices where the intent is to discourage future visits by undocumented ESRD patients, such as placing and removing a new temporary hemodialysis catheter at each visit, should be avoided. Advocating for patients to return to their country of origin or relocate to a state with more robust ESRD services are not reasonable or long-term practical solutions to this growing challenge and are examples of burden shifting to avoid confronting the ethical problem. Furthermore, repatriation has the added harm of relocating a patient to a country with even fewer resources for dialysis. Although that may be a permittable political consideration, it is not an ethical one. In short, the current approach to caring for these patients (namely, EOHD) that knowingly increases their mortality and morbidity, in direct conflict with the patient's expressed preference to comply with regular outpatient dialysis, is a morally questionable solution. It directly compromises respect for principles of justice, beneficence, and non-maleficence by conditioning care on patients' ability to pay, citizenship status, and race or ethnicity. It is, in fact, indefensibly participating in a form of systemic injustice and discrimination. Advocacy for UIs with ESRD should start in the ED and extend to the hospital, local community, state, and nation. Stakeholders should consider the following actions, as outlined in Table 1 . Hospitals should consider providing scheduled dialysis rather than Hospitals and health systems in the same community or region should consider inter-institutional collaboration to distribute ESRD care for UI patients equitable with one another, recruiting third party arbiters if necessary. Competitive healthcare markets and financially strained organizations will be tempted to retain an EOHD approach to UI patients with ESRD. This may be especially likely when one organization in a community takes the medically preferable approach of scheduling these patients for regular outpatient dialysis. As has been discussed, this expensive care, is not currently covered by our healthcare insurance system, and local healthcare organizations should seek to collaborate with one another to avoid local medical tourism between institutions for the most hospitable dialysis provider. At the state level, EPs should advocate for Medicaid coverage of patients with ESRD regardless of citizenship status. As of 2019, only 12 states provided this coverage for UIs. 27 One general internist was able to succeed at accomplishing this change at the state level in Colorado. 28 She has now become a recognized expert on the effects of regularly scheduled dialysis on both patient outcomes and the patients' family caregivers. The United States needs a comprehensive, national solution to this problem. Interventions at each of the preceding levels make improve- Although EMTALA has been successful in curbing "patient-dumping" behaviors that prompted its enactment, reliance on its obligation in the care for UI patients with ESRD requiring dialysis is not sufficient. This analysis of the unique problem of UIs with ESRD highlights the medical and moral shortcomings of EOHD. Most immediately, emergency physicians should recognize an obligation both to advocate for their UI patients' access to regular dialysis (rather than EOHD) within their institutions and to local and state leaders. Hospitals, health care systems, and state and federal governments should accept comparable obligations. Tolerance of an emergency-only dialysis approach should be recognized as a moral failing at every level of the healthcare continuum. The authors declare no conflicts of interest. 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